Matt had his check up this afternoon. You'd think I'd be a prime candidate for medical school with all the echocardiograms I've seen, all the EKGs I've seen, all the models of hearts I've seen and handled.
But I'm not. Not even close.
Tonight a piece of reality struck.
Matthew will never have a "good" check up. There's an anatomy lesson coming on, so hold on to your seat.
Above you'll see a normal heart. The pulmonary valve sits in the uneven section just under the letters PA in the blue. The light blue and the red indicate where the volume of blood flows and the dark blue are all the walls of the heart muscle. As the heart pumps, blood flows from the body to the right atrium (RA) and through the the tricuspid valve to the right ventricle (RV) and up through the pulmonary valve to the pulmonary artery (PA) and out to the lungs. The blood is oxygenated and sent back in to the heart where the left ventricle (LV) pumps the blood to the entire body. So, the RV and the muscle surrounding it doesn't have to be too big and strong because it's final destination is the nearby lungs, where the LV needs to send blood to every extremity of the body.
Up until this point in time, I've been worried about the condition of Matt's valve. He has a bovine valve that was placed in his heart nearly four years ago. Wow, has it been four years already? This March. Anyway, I only worried about the valve itself. I knew with Matt's heart growing along with the rest of his body that this implanted valve would not function at 100% forever.
The truth of the matter is, Matt's heart, with or without a "new" valve, will never function at 100%. It will never be "normal". At first, Matt's valve was sealed shut and no blood could flow to the PA at all. He survived because, as a fetus, he had an extra passage called the PDA which allowed oxygenated blood to flow through the heart. Now, however, there's a different circumstance. The valve has leakage. It started out working okay, with some mild leakage. But over time his heart has grown and the leakage has increased and is now moderate to severe. Matt's valve cannot shut completely to keep blood flowing in one direction and even though blood pumps from the RV to the PA, it slips back into the RV from the PA in between pumps. And so, if you see this picture at the left, the muscle around the RV (the dark blue) is very thick. The heart is actually very strong and it has to compensate for the lack of "normal" flow.
Matt's heart doesn't show much of a change between today and six months ago. But his RV is considered "large." Not that the volume within it is large, but the muscle around it is large. The muscle is pumping so much to try to get the blood to the lungs that it can cause a blockage in the path to the PA. Or, the RA (which is also enlarged) could end up growing too big and causing blood to pool and creating clots.
And so I've suddenly realized there's way more to it than just if the valve works. I've learned what it is the doctors are doing. As Josh put it, it's a numbers game. Because of the extreme risk to put a person on a bypass machine as the surgeon cuts open his ribs and physically touches his heart, they risk the anatomy of the heart. Yes, there's a risk with having a leaking valve. Yes, there is a risk with having over-sized muscle walls in the heart. Yes, there is the possibility of clots or loss of oxygen. But can your body stand to continue these risks a little bit longer to avoid open heart surgery?
Now there is the possibility when he stops growing that his valve will work with mild leakage for a while longer. Possibly. But then it becomes the game again of not replacing the thing that eventually causes so much damage (the failing valve) that it's life threatening because the alternative is life threatening-er.
No, my son does not have an obvious defect. His condition would even surprise most people that meet him but don't know his story. But I can't ignore it. I can't forget it. I can't let it go without thinking about it every day.
In six months we'll go have an MRI to try to get a better idea of how that RV is doing. Then we'll go a week later to sit down with the doc to discuss the results of the MRI and do another echo. Then we will see if he has a better idea of when we want to replace the valve again.
And so we continue to wait.
4 comments:
Thanks for all that info. It helps us to understand what's going on when you explain it all like that.
And if/when the time comes, I'm always available for blood.
Thinking about you and adding my prayers to everyone else's.
Ah the education that we get because of our kids. See, I can never truly understand; but really, I love you. You can do it. Matt can do it. Thank you for helping us through Lizzy's heart procedure. We're on your side.
I'm sorry his appointments are so stressful. I know what you mean about never forgetting his condition and thinking about it every day. I've often wished that Chloe's condition didn't worry me every single day, yet every single day it's there smacking me in the face letting me know that the future is unknown. But what a test of faith. I always remember to "Consider the Lilies," and "Lead Kindly Light," because the Lord will take care of His children -- Matt AND YOU -- when you feel those stressful feelings. Trust Him. I know you know that, so sorry for the sermon ;)
Love you and thinking of you xo
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